First time here. Feeling overwhelmed

ShadowRider

Male, gay, 67, recently retired. Have been with my husband since 1977. He (74 next week) was recently diagnosed with Alzheimer's and the typical problems are beginning. Yesterday I had to make the decision to take away his car keys, and now he won't speak to me. He loved being able to drive places, but it's just become unsafe for him to do that any longer.

I lost both of my parents to the same disease in 2016, just 11 days apart. They were both 93, so it wasn't so unusual, but I never expected to have to spend my retirement worrying about my husband every minute. I was really hoping we could travel places together that we always wanted to go, but that's just not possible now.

When he gets angry he tends to turn it inside, and do things like throw out his junk, including important stuff sometimes. He's been a hoarder for decades, and I try to keep it manageable, but it interferes with keeping the house in good repair. Honestly it's a problem that has needed dealing with for years, and now I'm going to be forced to do it, which will make him more upset.

More than anything, I just need a sympathetic ear, which I hope to find here.

Crushed

Welcome welcome welcome

Wonderful folks here who have all been there done that in Dementia terms.
 
Ive been on this road 12 years.  My wife was a physician and is now in Memory care 
I'm a retired legal academic  so I tend to focus on legal questions but Im also a very good cook if you need any help in that direction.  

My wife was a hoarder on a grand scale   I disposed of 32 computers he had here
  
 You are among friends I assure you

Quilting brings calm

Yes, you are among friends here.  Welcome.  We try to be supportive -don’t get upset if it takes a while to get replies.  Sone people can be here often, others get only a few minutes to themselves every day.  Have got for all your legal documents done? medical and financial powers of attorneys, living will or DNR paperwork, HIPPA form ( so you can talk to the doctors), wills etc?  Are you joint account holders so that you can pay bills and keep him from making unwise financial moves?

Joe C.

Welcome, but I’m sorry you needed to seek out our community. As others have stated there are lots of great people here with a wealth of experience on this journey. As Quilting mentioned getting your legal & financial house in order should be at the top of your to do list. Putting this off can have disastrous results down the road.

Jeff86

Adding my welcome, Shadow, and sorry you have reason to be here.  You’ve been down this road with your parents—alas—but likely will find it an altogether different and even more challenging experience with your spouse.

Most of us are devastated when we get the dx, and retirement dreams disappear as we scramble to put together plan B.  Also disappearing:  having a loving companion with whom to share decision-making, or just the events of the day.

With a recent diagnosis, the first focus as others have already said is to get legal and financial affairs in order, especially when your husband is still able to act.  Early stage is also a time to maximize activities your DH is still able to enjoy.

You will read here about all kinds of manifestations of AD—it can be a terrifying read, but your DH may never exhibit many of these symptoms.   What matters is that this is an extraordinary community, knowledgeable, sympathetic, and generous with both creative problem-solving suggestions and boatloads of empathy.

Jo C.

Hello ShadowRider and a very warm welcome to you.  This is a very soft place to land; there is much support and some good experiential wisdom from those who are farther along the dementia road.  It is a great place to vent and know that we will be understood.

You have been with your husband for 43 years; that is a very long time.  It must feel as though the earth is shifting under your feet; I am so very sorry.  The losses that were not expected can really add stress and for many, can bring grief.  Those early challenges when judgment and logic are compromised by the damage to the brain is difficult as the behaviors get more florid and difficult to manage.  That eventually most often will become smoother over time, but it is difficult to manage all the changes as they begin to appear early on.

Most of us, when there is a need to clean things out, try to do it when our Loved One (LO) is asleep or if we can have them go on an outing or to lunch with a friend.  Sometimes we have special clean trash barrels where our LO can throw things away that are still needed and we can go and recover them when they cannot see us doing so.  The driving issues is a hot button topic.   Many of us gain cooperation from our physicians who will write a prescription for no more driving which is an easier place for blame to be placed.  It is hard to find a path for awhile.  We sure do get it.

Would your partner feel more centered if he attended a daytime activity or even a Daycare Center a few days a week?  Some of us have our LO in Daycare and they think they work or volunteer there.  The Daycare staff usually honor this and help with the "work" designation.

If you can, be sure you have all your legal matters in place, that is a very good start.  A Certified Elder Law Attorney is best for such activity  Also; having good support for oneself can also be helpful.  Friends, family, clergy, any of these, as well as a good healthcare team with the primary MD as well as a dementia specialist will be helpful over time.

And then there is this place.   We will always be here and we certainly understand.  Come as often as you wish; you can share anything and you will be understood. This is the nicest group of people.

We are all here in support of one another and that now includes you too!  I send warmest of thoughts your way and look forward to getting to know you better.

J.

Crushed

It's always easier to help on legal issues if you could put your state in your profile

As we all know long time gay couples are often only more recently married.   It may be relevant how long you are married although many statues have "backdate extensions"  

     

 

Lynne D

Welcome ShadowRider, to our safe and supportive space. Visit often, lurk, post, reply…whatever works for you. I have not found any other platform, place,group or forum as helpful and non-judgemental as this one. 

As others have said, now is the time to get your legal affairs in order. That has removed a lot of barriers for us.

Ed1937

Rider, welcome to the forum. You found a good one, that's for sure. Sorry you're dealing with this too.

Just one more vote for seeing a certified elder law attorney. This is really an important step, and should not be put on the back burner. 

While this is a great forum, a local forum might be better to get information on local issues. Memory care facilities, references for a good attorney, and any other issue with local connections are a few that come to mind.

If you read some of the other posts, you will understand how much empathy there is here. We care about one another.

rlpete

An unfortunate welcome. You will find many sympathetic ears here whenever you need one. I lurked for awhile before joining.

I understand the comment on not expecting this in your life. My wife has been living with mixed dementia now for 5 years and we are mid-60's. We did get to do a lot together but we also had a lot more planned once we retired. Now our trips are usually a few hour drive to a condo we rent at the shore.

Take care. 

Iris L.

ShadowRider wrote:

When he gets angry he tends to turn it inside, and do things like throw out his junk, including important stuff sometimes. 

Welcome ShadowRider.  You have to secure (HIDE) important papers.  Also anything dangerous, because PWDs will drink cleaning fluids.  Read about home safety and dementia-proofing the home.

He's been a hoarder for decades, and I try to keep it manageable, but it interferes with keeping the house in good repair. 

Loss of executive functioning causes inability to make decisions, for example what to keep and what to discard, also doing household chores.  PWDs need to live in a SIMPLIFIED environment.  Read about instrumental IADLs.

Also read about anosognosia.  He is not aware that he is having do much trouble or that he loses things.  Anosognosia is a characteristic of AD and you cannot change it, you have to learn work-arounds, which the members will tell you about.

Iris L.

Davegrant

Welcome to the site. Driving was one of the first issue I had to deal with when this journey began about five years ago. My DW's primary physician said to me that I should blame her (PP)  for the drivers license suspension. I did and I was grateful that I did because my wife ranted for over a year whenever the topic would arise. At least I was not the main target. This was the beginning of many changes in our relationship that continues to this day. I try to live a day at a time and not look ahead but at the same time prepare myself based on the experience of others who have direct experience with this disease. My dw has the condition called anosognosia, which I understand to be that she has no awareness that there is any problem. So, this leaves me alone to find resources to figure out what is going on in the relationship and in my emotions. I find that I am the person who needs to change. This site is my primary resource because I value the expeience of others who are in the same situation. Many answers are here and I just need to ask the question. 

Dave

Just Bill

Hey Shadowrider, the only piece of advice I can give you is keep yourself intact. You two have been together a long time. He is going to change for the worse a little every day. Don't go with him emotionally. Keep yourself happy and sane. Your patience is going to be tested like it never has before. Take care of your body by working out everyday. It's easier to get a half hour a day than get a 2 hour session 3 days a week. Take care of your mind by meditating on patience. Breathing exercises is something I highly recommend. Breathing exercises strengthen the cardiovascular system and provide a vehicle to begin a meditation regimen. Breathing connects the body and mind. It isn't him anymore it's the disease. He will forget a lot of things but not how to push your buttons and p-ss you off every chance he gets. He is your husband and all the emotional stuff that comes with that, but now he is going to regress more and more like a toddler. That is where you are going to need your patience the most. Good luck and stay positive.

Faith,Hope,Love

Hi ShadowRider.  I too would like to welcome you to our forum.  I agree with what everyone else has said, especially Just Bill.  The one thing I'm still learning is that I'm the one that needs to change as his disease progresses because my DH can't.  It's not easy and a lot of times I fail.  But I'm trying.  Don't beat yourself up when you fail, just recognize we're all only human and keep going.  Also, try to make sure you always take time for yourself.  My DH can suck the life out of me if I let him.  He can be very needy and demanding.  Sometimes I just have to make myself unavailable.  I'm within earshot so I can tell what he's doing but out of the room in order to save my sanity.  I've found that the more positive and upbeat I can be, the better my DH behaves.  It's like they have an innate ability to sense bad vibes or good vibes and respond accordingly.  Glad you found us.  This is the best place you could be.

ShadowRider

THANK YOU to everyone who responded. SO much good information, and a few things that scared the crap out of me.

We have most of the legal things taken care of. I have POA for his finances and healthcare. I have access to his doctors' online system and can ask questions and manage his appointments One thing I DO need to do ASAP is modify some of that, like my will. He can currently make medical and financial decisions for me, and I need to move that to my youngest niece, who will also be the executor of my estate. Our attorney specializes in wills and estates, and has expertise in elder law as well, and knows Illinois state law as well (we live in Chicago).

As far as taking care of myself: my main outings are grocery shopping and going to the gym 4 times a week. I see a personal trainer twice, and work out alone the other two times. Each time I'm gone 2-3 hours, which is enough to give me a break. So far I'm not worried about leaving him alone for that amount of time, but that could change, and I'll have to figure out how to handle that. I do NOT want to give up my workouts, as they are key to my health and sanity.

I admit one of my big concerns now is that I have a motorcycle and go out on rides now and then. If something were to happen to me, he would be alone and unable to manage anything. So I want to make sure that my sister, his sister and my best friend have access to certain keys and documents, and the authority to manage various aspects of our life together.

JJAz

Welcome.  You might consider wearing a medical bracelet identifying you as a dementia caregiver, along with emergency phone numbers.  Also, if your DH will tolerate it, he should also have a medical bracelet identifying him as a dementia patient in case he wanders.

Blessings,

Jamie

ImMaggieMae

Welcome to the forum, Shadowrider. Along with suggestions that others have given, you might want to consider hiring a caregiver for a few hours while you are at the gym or out grocery shopping. There comes a time when they shouldn’t be home alone and having someone to keep him safe and give him another person to talk to can be a good thing. We have several agencies in the area that employ caregivers. They aren’t medical but the ones around here have people experienced in taking care of people with dementia and can do things like change Depends when things get to that point or serve simple meals, etc. Around here the going rate is about $35 per hour with a 4 hour, 3 day per week minimum. That probably varies by location. It works well for us, so I can get away to the grocery store and my own dental or medical appointments. Or sometimes it’s just a chance to sit down and pay bills without interruption.

ghphotog

Driving was one of the first major freedoms I had to take from my wife. I used to take her to deserted location and let her drive around a little just for fun. Can't do that any longer as she barely knows how to just get in the car now. She no longer brings it up.

Gig Harbor

Welcome ShadowRider. This is a site that I wish no one had to join but since we do it is one of the best. I worried about what would happen to my husband if I was injured or if I died. I put together a binder for my daughter that covered everything as far as investments, property, insurances etc. I also realized that he would need immediate placement if something happened to me so I visited 12 places and found one that would be a good fit. Six months later I ended up placing him and all the groundwork was very handy. Come up with a Plan A and then a B and C to cover all possibilities. It will take some stress from your daily life. Good luck!

CarrieS

Hello SR,

I am brand new here and so very grateful for the information and humans. My best friends husband asked if I would help “care” for her a week ago now. I lived with 2 other friends in my life with dementia but I didn’t have this site.

It’s only been a week and I go home each night.  I worry about doing things incorrectly, treating her too much like glass or not being concerned enough.  My friend has dreams she feels are real and I have conversations where I am having a harder time, than over the past year, convincing and reassuring her what reality is.

Thank you.

Carrie

Ed1937

Hi Carrie, and welcome. This is a forum nobody is eager to join, but most everyone is glad they found it. Sorry you're dealing with this again. 

Trying to convince your friend what reality is, is probably something that you will not be able to do. We always say that we have to learn to live in their world because they can't learn to live in ours. The best thing you can probably do when she tells you about something that is not true, is to make short comments, then change the subject. They typically can't keep more than one thing in their mind at one time. Just don't tell her she is wrong. That just leads her to confusion.

If you have any other concerns, start a new topic, and let us know what's bothering you. People here can offer great suggestions on how to handle most any problem. They don't always work, but they're worth trying.

Annen1014

I also went through this with my mother and my aunt. I was responsible for their finances and care  but they were not in my home. It is very different with a spouse. My DH  quit driving last year, on the advice of our neuropsychologist. He is sad that I am now burdened wilth all the drive  but he has accepted it more graciously than I had feared. 

We are in early stages  but I find support from reading others posts .

The hoarding will probably get worse. I hide the things I am getting rid of. I think when our loved ones start to lose memories and other parts of themselves  they want to cling to physical possessions to make up for their losses. 

Annen1014

That's a great idea. I had never considered getting an ID Ffor me, but it makes good sense.

Janco

Hi:

You have an ear here!  Similar situation: I am a Gay male, 69 years old.  My husband (together since we were actually young) is 67.  Hubs has had memory issues since major surgery in 2017. He retired right after that. The neurologist and neuropsych don't think he has Alzheimers but suffered brain damage from the anesthesia.  I say there isn't much difference and I am .acting as if he has incipient dementia anyway.  We are in the process of making out wills and some estate planning. Our friends know about Hubs' condition but frankly there isn't much help they can provide.  He can still drive and conduct usual activities of life, but needs to be constantly reminded of where we are going, who we are seeing, etc.  He has also lost some of that sharp, snarkiness that used to make me laugh.  Oh well, we just have to remember who our LO's were and are.

Janco